Michael Joyce is a multimedia producer and writer at HealthNewsReview.org. He tweets as @mlmjoyce.
Perhaps you’ve heard of recent advances in using a patient’s own immune system to fight cancer.
One such therapy, getting a great deal of attention in Phase II trials treating blood cancers (like leukemia and lymphoma), is called “chimeric antigen receptor T-cell therapy” — or CAR-T. It works by collecting the patient’s own T-cells (white blood cells which recognize foreign or abnormal cells) and reprogramming them to attack specific types of cancer cells. This therapy has been particularly successful in targeting refractory Acute Lymphocytic Leukemia (A.L.L.) in children and young adults, with remission rates quoted between 60 and 90 percent (many of the studies funded by Juno Therapeutics, Kite Pharma, and Novartis — the three major drug companies invested in this technology).
No wonder we’re seeing videos like this from an NBC affiliate in Philadelphia:
What’s commendable in this video is the reporter actually mentions “leukemia” and that this is an experimental treatment. And, at the end of the video, the anchor points out “the doctor stops short of calling it a cure.” However, then she quickly adds “but it is working in 90 to 100 percent of patients with this type of cancer.”
Which type is that? And does “working” mean remission? Or does it mean cure? … as was dangled in the lead-up to the video (“one step closer to a cure”). This is not made clear to the viewer and it is an incredibly important distinction. “Using the word ‘cure’ here would be dreadfully premature,” says Dr. Vinay Prasad, an oncologist at Oregon Health & Science University (OHSU) in Portland, Oregon.
So if parents missed the leukemia reference early in the video, and zero in on that clarion “100 percent,” they may walk away with the impression that there is a cure out there for their child, regardless of cancer type. And that this perceived cure comes without risks or side effects, since none are mentioned in the story.
And the risks of this treatment, as pointed out in an excellent article by Meghana Keshavan in StatNews, are not trivial. The re-engineered T-cells that are injected to fight the cancer can trigger what is called “cytokine release syndrome,” in which small proteins called cytokines elicit an intense mix of fever, nausea, fatigue, organ swelling and low blood pressure. The treatment is also toxic to the brain and can cause hallucinations and memory loss. Last summer 3 CAR-T immunotherapy patients died from severed brain swelling (cerebral edema).
If you think journalists taking this story to task somehow shows insensitivity to children with cancer and their families I would argue that:
Some context is important here. The remission figures of 60 to 90% are for A.L.L. in children only. Furthermore, up to half of those cases relapse. We are talking about a cancer subtype that represents less than one percent of all cancers. Andrew Pollock in his excellent article about CAR therapy (nytimes.com; August 1, 2016) also had these cautions:
- The CAR therapy works now only for patients with some B-cell lymphomas and leukemias, which account for only about 80,000 of the 1.7 million cases of cancer diagnosed in the United States each year. It has not been successfully used to treat malignancies of the lungs, breast, prostate, colon or other organs.
- Because it is personalized, cell therapy is likely to be frightfully expensive — probably hundreds of thousands of dollars per patient, though the companies bringing these treatments to market have not yet said how much they would charge.
But all that wasn’t in the video was it? Are we asking that producers make their videos unwatchable by cluttering them with detail? Absolutely not. But if they are going to contribute to “miracle-mongering” by making “breakthrough” claims they should, at the very least, provide links to important information whenever and wherever they post their video.
[Note: We always strive to go beyond criticism and offer help for journalists who want to do better; here are “Six tips for writing accurately about cancer immunotherapy drugs” by deputy managing editor Joy Victory. Finally, it’s worth noting that it wasn’t just the NBC affiliate in Philadelphia that employed “breakthrough” terminology. As you can see from this tweet, so did the Children’s Hospital of Philadelphia]
Comments (1)
Please note, comments are no longer published through this website. All previously made comments are still archived and available for viewing through select posts.
Patrick puerta
January 15, 2017 at 8:57 pmNot convinced that allogeneic liquid cancer treatment will be so expensive ( even if in phase 1 trials ). off the Shelf car t treatments, if safe and efficient enough, can change paradigms.
Our Comments Policy
But before leaving a comment, please review these notes about our policy.
You are responsible for any comments you leave on this site.
This site is primarily a forum for discussion about the quality (or lack thereof) in journalism or other media messages (advertising, marketing, public relations, medical journals, etc.) It is not intended to be a forum for definitive discussions about medicine or science.
We will delete comments that include personal attacks, unfounded allegations, unverified claims, product pitches, profanity or any from anyone who does not list a full name and a functioning email address. We will also end any thread of repetitive comments. We don”t give medical advice so we won”t respond to questions asking for it.
We don”t have sufficient staffing to contact each commenter who left such a message. If you have a question about why your comment was edited or removed, you can email us at feedback@healthnewsreview.org.
There has been a recent burst of attention to troubles with many comments left on science and science news/communication websites. Read “Online science comments: trolls, trash and treasure.”
The authors of the Retraction Watch comments policy urge commenters:
We”re also concerned about anonymous comments. We ask that all commenters leave their full name and provide an actual email address in case we feel we need to contact them. We may delete any comment left by someone who does not leave their name and a legitimate email address.
And, as noted, product pitches of any sort – pushing treatments, tests, products, procedures, physicians, medical centers, books, websites – are likely to be deleted. We don”t accept advertising on this site and are not going to give it away free.
The ability to leave comments expires after a certain period of time. So you may find that you’re unable to leave a comment on an article that is more than a few months old.
You might also like